Caregivers Out Loud
The experience of living and caring for someone with dementia is not always a universal experience and there can be different situations and patterns, however. There are some similar challenges caregivers face when trying to communicate with care recipients who are living with dementia. In this episode, Bill Israel speaks with Amelia Gillies, a Support and Education Coordinator with the Alzheimer’s Society of BC about caring for someone living with dementia. Amelia shares stories she’s heard on the support line, and also her own personal experience caregiving for people with dementia. Listen in as she provides education and suggestions for you to try when you’re caregiving.
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- “This is not a linear progress. The grief along the journey is not linear as well, because you might come to a place where you’re feeling, you know what, I, I’m at a place of acceptance. I understand this, I’m ready for what’s to come and then something in the disease, like I said, it’s a progressive disease, will change. And then all of a sudden you’re right back to, you know, feeling grief, feeling anger, feeling, you know, resentment. All of those things naturally come up in, in their journey as a caregiver.” – Amelia Gillies
- “Rather than using logic, rather than saying, well, no, you can’t drive because we gave up your driver’s license. Remember when we went to, you know, that’s logic, right? Instead of using that, you’re reassuring and responding to that emotion. oh, I, I can see you’re. You’re really worried about that, you know, I’d, I’d be too driving was really important. Remember when we went on that drive through Winnipeg and the mosquitoes came through the car. So you see, I responded to the emotion there and then, I redirect it.” – Amelia Gillies
- “This is a disease where you have very little control over it too. We don’t know exactly when it will progress or how symptoms will develop. We have a general idea, but we don’t always know. So we don’t know what the future will come, and I think that’s a great way of centering your experience of being in the present. – A lot of people, especially in the middle or later stages of dementia, are really living in this particular moment right here, right now. So how can I do the same thing? How can we kind of merge our realities a little bit better by just focusing on the present, the here and the now?” – Amelia Gillies
- First Link® Dementia Helpline as our primary resource: English: 1-800-936-6033 Monday to Friday 9 am to 8 pm, Cantonese and Mandarin: 1-833-674-5007 Monday to Friday 9 am to 4 pm and Punjabi: 1-833-674-5003 Monday to Friday 9 am to 4 pm
- Alzheimer’s Society of BC https://alzheimer.ca/bc/
- Creativity as a Form of Self Care episode https://www.familycaregiversbc.ca/podcast/episode-14-creativity-as-a-form-of-self-care
- Family Caregivers of BC Caregiver Support Line at 1-877-520-3267
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Bill: Change is a natural part of life. As we learn new things, we adapt and grow. But when you add on an ever-altering disease like dementia, the scary part is the unknown of what’s to come. The lack of control when caring for a person living with dementia is challenging at times, but it can be gratifying as well. Since dementia is a progressive disease that changes over time, the care you provide will need to adjust along with it. One way to feel more “in control” is to be prepared.
In today’s episode, we learn from the support and education coordinator for the Alzheimer’s Society of BC, Amelia Gillies. Amelia connects people affected by dementia to support education, and information about dementia. She works with people throughout the progression of dementia, including from pre-diagnosis.
Amelia is full of great tips, not only because of her job, but also because she has a direct emotional link to the disease with three of her family members living with dementia.
AMELIA: I think there’s a saying, if you’ve met one person with dementia, you’ve, we met one person with dementia, and same with family caregivers. If you’ve met one caregiver, you’ve, you’ve met one caregiver.
BILL: Absolutely. Yeah. It’s so important to remember that this isn’t a universal experience except at a spiritual level probably.
AMELIA: I really saw that echoed in my own family, every individual who went through it and my family had a dramatically different experience. And the experience of caregiving from my family was dramatically different each time. And that’s what I, I find day-to-day in my role at the Alzheimer’s Society and, and anytime I think I’ve got a handle on this thing, called dementia, it really surprises me. It’s also helpful to actually define what we’re talking about here. The term dementia, it doesn’t actually refer to a specific disease, rather it’s kind of an overall term for a set of symptoms.
And those symptoms are caused by disorders affecting the brain. One of those disorders or diseases is Alzheimer’s disease hence our name. But we actually support folks with all different types of dementia. One of the kind of the overarching similarities between all these diseases is that they are progressive, meaning that they get worse over time and that they’re not reversible as well.
BILL: So they get progressively more intense, uh, or however you would describe that.
AMELIA: There’s lots of different scales sometimes people say, oh, my person’s at stage six are all my person’s, uh, early stage, and generally there’s the early stage where people are starting to be affected in their day-to-day life. Middle stage where they’re needing assistance with more and more things in their day-to-day life. And then later stage where we’re really talking about kind of end of life and medical care.
The experience of being a caregiver across that, it is very different at each of these stages as well. So you might think you gotta handle on things in one stage and then because this disease is constantly changing, the experience of being a caregiver, the experience of responding to that means that you also have to be constantly changing. You have to be constantly on your feet and learning new things and trying new approaches.
BILL: And dealing with your own emotional responses, you know, to whatever the fear is. I don’t understand this. I, I don’t know how to handle it. All of that happens in that dynamic with the care recipient.
AMELIA: Big swirl of emotions. This is not a linear progress. The grief along the journey is not linear as well, because you might come to a place where you’re feeling, you know what, I, I’m at a place of acceptance. I understand this, I’m ready for what’s to come and then something in the disease, like I said, it’s a progressive disease, will change. And then all of a sudden you’re right back to, you know, feeling grief, feeling anger, feeling, you know, resentment. All of those things naturally come up in, in their journey as a caregiver.
BILL: Of course. Yeah. And it raises anxiety, you know, am I capable of dealing with this? Um, and am I being effective? I want to be compassionate and loving, but I don’t know what to do here.
AMELIA: Absolutely. And that’s why I think a lot of the work we do at the Alzheimer’s Society is really informed by that helping people feel like they have more tools in their toolbox to be able to approach this no matter what stage of the journey they’re at. We do, uh, a bunch of education and, and folks really find that they come out of that feeling like, well, I, I’ve, I’ve got a few more tools. uh, you know, as things are shifting, as things are changing, maybe I’m a bit prepared for what might come.
BILL: Sure, sure. Can you describe that a little bit? What sort of, uh, tools, what sort of, supports, would someone in your position be providing?
AMELIA: A lot of my day I spend on the phone with folks we have a first link Dementia helpline, which is just a wonderful resource. And it’s also available in, um, Cantonese, Mandarin, and, Punjabi. And we, we run it across the province so that anyone affected by dementia, someone living with dementia themselves, a caregiver can call us up with questions, big or small about dementia. They can chat directly with us, the number is,1-800-936-6033 for the English Dementia helpline. And it just comes through to our staff.
So it is the opportunity to connect to a real person who’s either gone through this or has that experience as a staff member, as the Alzheimer’s Society of BC to really, maybe we’re gonna link you to our support groups or to, you know, connect you to another service like the family caregivers at BC. Or maybe we are going to suggest some education for you. But a big part of it is, troubleshooting kind of one-on-one your experience, troubleshooting, you know, this is what my person’s doing today, how do I respond?
We also, like I said, we, we connect people to our different programs, and I’ve mentioned education a few times, but I know family caregivers at BC has a great caregiver support network. And we also have caregivers support groups specific to folks affected by, uh, dementia. And we have our Minds in Motion program as well in lots of different communities across species, which is, a chance for people to do bit of movement, a bit of brain exercises, someone living with dementia and a care partner to do together.
BILL: Like, like a physical movement, get up and walk around?
AMELIA: So we run them out of various different rec centers, uh, across British Columbia, and you’ll do you know, 45 minutes to an hour of activity. I’ve gone and I can get a good workout, but someone living with dementia or someone you know in their fifties, sixties, seventies, eighties, can still get a good workout that’s dementia appropriate as well.
BILL: Wow. That’s amazing. So, there’s definitely a somatic link here. My, my physical body what’s going on with me, health-wise generally has an impact.
AMELIA: Yes, dementia lives in the brain, right? But what does the brain do but control absolutely everything that we do, including our body, including our movement?
BILL: Absolutely. Until you’re in that situation, you don’t realize how desperate you become about finding some support, not just informational, but emotional. Um, and even spiritual. I mean, it’s a difficult row to be with this person often 24/7 and maintain your own equilibrium through this.
AMELIA: Yeah, I think that’s a question that really comes up a lot when I’m speaking to caregivers is, how do I cope with the repetitive behaviours can really be a, a sticking point. Whether that’s someone’s frequently asking the same question, or maybe they’re stuck on a negative thought or emotion. Or, you know, I was speaking to someone the other day, they’re stuck, they, they want to drive when they can’t drive anymore. Um, and they’re just stuck on that thought. And one of the ways that we really approach that is we can’t change their reality the way that this is a brain disease working in their brain.
That’s not allowing us to change their reality, but we can change ourselves. We can’t change them but we can change ourselves. It’s not helpful to tell someone you’ve asked, ask the same questions five times already, that you know, that’s not helpful. and so a lot of the time we’re really going through tips with caregivers. You know, when you’re feeling that frustration building, how do you respond in a way that’s helpful? How do you react? How do you move forward and, and find the moment?
BILL: And I’ve heard, uh, family caregivers, speak of kind of a, a moral or ethical conflict about, well, maybe I’ll just lie to them. I’ll give them an answer that is not true, uh, in hopes that it will keep them from repeating the question. And I’m thinking, wait a minute, um, that’s probably not the best thing to do.
AMELIA: It’s a combination of someone called it fiblets the other day. I really liked that one. Or, or therapeutic fibbing. If you wanna think of your doctor giving you a prescription for this.
BILL: I think I’ve heard that, that phrase as well.
AMELIA: I think before you jump to that, there’s a couple of hoops you need to go through first to really make sure that you are addressing what’s behind the questions or behind the emotions. So if you’re looking at someone who’s experiencing maybe you’re noticing they’re saying something that doesn’t make sense or they’re asking a question a number of times, recognizing the emotion behind the words or the behaviour. Are they looking anxious? Are they worried? Are they angry? Are they calm?
Then, rather than using logic, rather than saying, well, no, you can’t drive because we gave up your driver’s license. Remember when we went to, you know, that’s logic, right? Instead of using that, you’re reassuring and responding to that emotion. oh, I, I can see you’re. You’re really worried about that, you know, I’d, I’d be too driving was really important. Remember when we went on that drive through Winnipeg and the mosquitoes came through the car.
So you see, I responded to the emotion there and then, I redirect it. So you’re not necessarily leaning into creating some elaborate lie or, you’re validating because no one wants to hear, you’ve already asked that question. Uh, do you remember when we went to Winnipeg? That’s not a helpful, that’s not a helpful way to approach it, right?
BILL: Wow. Wow. What a beautiful insight. I, and I, I think of it often as the last thing that leaves self as we age is our imagination. And a lot of times, we fail to do what you just said. What’s going on in their imagination that I need to respond to here? And it’s not logical and it’s not scolding, what a beautiful way to think about that.
AMELIA: If you’re a caregiver and your, your in that moment and you’re feeling that frustration building you’re feeling like you can’t deal with this situation, or this person’s really stuck on this thought, or this delusion, or this, this emotion. Going through, those three Rs, recognize, reassure, redirect you know? Thinking of a really structured approach, which is what I went through there. Then you can be creative, but within a bit of a framework. But then you can also look at what you can do to change the situation.
So can you change the environment as part of this redirection? If you can’t answer that question again, can you just go to the bathroom or go to another room? Oh, I’ve just gotta pop something in the microwave and then I’ll come back and we can have a chat about this.
I had a lady who, um, is a jigsaw puzzler, and she always has a puzzle out on her dining table. And when she finds herself that stress level rising, maybe it’s a question that’s been asked at, you know, many times of her, she goes, oh, just hold on one sec. I’ve just gotta put two puzzle pieces in here.
BILL: Wow. And it could be anything really. I’ve got cookies in the oven, or I hear the bathroom water running, I need to go shut or whatever. Uh, just to take that little pause. Wow. What a, what a good clue.
AMELIA: It might seem insincere or kind of forced at first, especially if this isn’t how you interacted in your relationship before. But this is like a muscle. It gets stronger, it gets easier the more you use it.
BILL: And in a way, you know, alleviating a bit of that guilt is this, this is kind of a self-care for you. You’re, you’re starting to lose your cool, you feel your own emotions rising in anger or fear. Uh, give yourself a break.
AMELIA: When we talk about self care, well, you need to care for yourself. It’s kind of kinda like, well, what, how the heck am I meant to do that when my day is, is full of caring for this person? And again, if you can kind of take a structural approach to this. Okay. I need to have more self-care. How can I change the structures around me to enable me to have that? Can you change your support network? Can you build in more breaks?
So maybe that’s formal support, like a respite or an adult Bay program through the Health Authority. Maybe it’s attending a support group. Then there’s also informal support, especially earlier in the journey of dementia, like booking in a friend of family to go with you for a walk as the caregiver. You know, a friend who kind of forces you to go out for that walk or go out for a coffee.
BILL: Do you have people who show up to your support groups that are going through that process of, I’m not doing enough, I should be doing more.
AMELIA: It’s rare that I come across someone who feels like they’re doing it right in this journey. Because it’s such a common experience. This is a disease where you have very little control over it too. We don’t know exactly when it will progress or how symptoms will develop. We have a general idea, but we don’t always know. So we don’t know what the future will come, and I think that’s a great way of centering your experience of being in the present, like you were mentioning there.
I like to come back in moments like this to wisdom or advice from people living with dementia themselves. And you can really look at living in the moment, enjoying this particular moment rather than worrying about the future, worrying about, or what I should have done in the past. A lot of people, especially in the middle or later stages of dementia, are really living in this particular moment right here, right now. So how can I do the same thing? How can we kind of merge our realities a little bit better by just focusing on the present, the here and the now?
BILL: And having been through the experience yourself, as you have progressed through it and maybe even transpired through it with a couple of family members, what sense do you bring away from it, having done it at all?
AMELIA: I still come back to the ways that Dementia can surprise you for just being, being different for every single person who goes through this. I try and find similarities between my family members or I try and find those moments, oh, well this was exactly the same for this person. I don’t think I could tell you a single similarity between three family members who went through it. It was, it was so different. And a caregiver said the other day, if you wanna dance with dementia, you’ve got to change your steps. I really like that one because it keeps you on your toes, that’s for sure.
BILL: Absolutely. Yeah. And, I know from caregivers that I’ve spoken with, and even out of my own experience that, there is a reward that comes from having done it at all. That my life was enriched, that even though I didn’t do it perfectly, if I could do it again, I’d do things differently. But nevertheless, being a family caregiver brings its own spiritual rewards that you can’t get anywhere else.
AMELIA: I think it helps a lot of people find how strong they are or how resourceful they are, and this disease typically affects people later in life. So, I think we have an idea of who we are as we get older and things stay the same. And if you’re all of a sudden a family caregiver and maybe you’re going to a support group for the first time in your life. You’re attending adult education about this for the first time in your life. You’re having to navigate the healthcare system and advocate for your person.
You come out of this with probably many people come out of this very, very exhausted for a long period of time. But you see so many people who come out of this, with so many thoughts on the process that there’s books written, there’s poetry written, there’s artwork written, and, at the Alzheimer’s Society of BC, we’ve just run a webinar on the experience of caregivers who are sharing their artistic endeavours and the way that they have found those through caregiving to help give themselves a sense of self in this, because you are a caregiver, but you’re also still yourself.
[PAUSE A BEAT // MUSIC STARTS]
BILL: I love the idea of these beautiful expressions through imagination and the creative self. If you want to explore this idea further, listen to episode number 14 called “Creativity as a Form of Self Care” which is linked on our show notes.
[PAUSE A BEAT]
So as your caregiving evolves, know that the Alzheimer’s Society of BC AND the Family Caregivers of BC are here to support you. There is the First Link Dementia Help Line that Amelia mentioned early in the episode, or reach us at the Family Caregivers of BC Caregiver Support Line at 1-877-520-3267. Both numbers are in our show notes for easy reference.
As we wrap up the episode, Amelia, what last words would you like to leave us with?
AMELIA: I want folks listening to know that they’re not alone in this journey. That there’s so many others going through it. And that can feel like a bit of a, a twee comment at times. But when you do connect to, whether it’s just listening to this podcast, or whether it’s connecting to our dementia help planner, maybe it’s just watching one of our webinars that’s recorded up on YouTube and seeing comments and questions that people have come through that may be remarkably similar to your own.
This journey can be incredibly isolating as a caregiver. And a big part of our role at the Alzheimer’s Society of BC is to help people feel less alone, to feel less like they’re going through this journey alone. Now whether that’s support or resources, um, information education or maybe just calling us up and, and telling us you’ve had a hard day and you want to know how to do it better tomorrow.
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VOICE-OVER: Thank you for listening to “Caregivers Out Loud”, powered by Family Caregivers of British Columbia and hosted by Bill Israel. Produced and sound edited by Organized Sound Productions. We acknowledge the financial support of the Province of British Columbia and the BC Ministry of Health – Patients as Partners Initiative.
If you like what you’re hearing, discover more episodes, and find more caregiving resources at familycaregiversbc.ca. And if you find these episodes helpful, please share them with your family and friends who may find it enlightening to hear these stories.
Finally, don’t forget to subscribe to our show on your favourite podcast listening app, so you can take us with you wherever you go. Thank you for listening and taking the time to learn and care for yourself with other caregivers, out loud.